dusting ourselves off

It's been a while since I've written a post, and not for lack of things to post about, but simply for lack of being able to put things in perspective and sit down long enough to post.

We learned a long time ago that there will likely always be something around the corner, medically, with Jack.  That is just the nature of TSC and after the first couple of blows you take, you learn to just expect something at some point.  It has to be monitored and scanned and managed all the time.  We had very high hopes that brain surgery would put us in a situation that we only had to monitor the tumors.  Only tumors.  Even that sounds so un-fair.  We knew that the possibility of seizures coming back was there.  And in all honesty, I was expecting it to happen in a few years.  But even a few years of seizure freedom would have been worth it.  I was not expecting it to happen 42 days after surgery and before he was even fully recovered.  That was a tough reality to deal with.

When I first saw the seizures, I saw 4 in only a few hours.  He had been sick though and what I was seeing could simply have been from stomach cramps.  He also pooped 18 times that day.  I kept trying to look at his eyes because that is how I can see if he's seizing but he would put his head on my shoulder and just tense up for a few seconds, then be fine.  I remember telling Jonathan about it and both of us being concerned, but he was sick with his first ever tummy bug so we figured we would wait and see.  Then the next day we were at the mall (don't worry, the doctor said that he wasn't contagious) and he was riding the little carousel thing that you stick a dollar in and 3 kids can ride.  He looked at me, said, "MAMA" in a very scared voice and reached for me.  I knew by his eyes that he was having a seizures and there was simply no doubt about it.  I scooped him up and held him, he stiffened up and was twitching too.  The lady next to me asked what was wrong and I said he was having a seizure.  She then asked if she could give him some candy.  (I could write a whole post just on that!)  But I told her no and walked away. 

Jack got over his tummy bug, but continued to have a few seizures a week.  We gave up a lot for that surgery, a lot of Jack's independence and care-free attitude, and a lot of sleep too.  We suddenly had a toddler who wouldn't let us leave the room to pee, much less leave the house without him.  Thankfully that has changed and he is (mostly) okay with both of those things now.  He used to never want to sleep in our bed and now that is the only place he wants to sleep.  He was in our bed with us for at least 6 weeks after surgery and now he goes to bed in his bed but moves to our bed at some point in the night.

He still has quite a bit of anxiety so leaving him to cry would not be a good idea at all, and after all he has been through I don't have the heart to do that either.  He has slept through the night in his room once since surgery.  ONE TIME.  Before he would wake up several times but put himself back to sleep, now he wakes up screaming bloody murder.  I actually think he starts screaming before he even fully wakes up because sometimes by the time we get to his room he is back to sleep.  He does fine with us sitting next to him in the rocker, but we don't want to sit there from 2:30 - 5 am.  We are starting to wonder if we ever have another baby if we are going to have to buy another rocker because the 1st child still needs his.  Anyways, we bring him to our bed with us some time in the night so that we can at least all lay down.  A few days ago he decided he wanted to be awake at 4 am and that is when I started a new rule.  No getting out of bed until 6 am.  He can lay there and scream if he wants, next to me of course, so it's just a glorified tantrum, but we aren't getting out of bed until 6.  I refuse.  Both Jonathan and I are a bit tired of getting kicked and smacked in our sleep, but it's really cute when he wakes us up by giving kisses.  He also likes snuggle but he calls it "huggles" which is super cute.

So yeah, we are exhausted and we really don't see an end in sight to this.  Sometimes I can talk him back to sleep over the monitor (there is a button I can press and he can hear what is going on when it is pressed) but he still ends up in our bed at some point.  I don't mind co-sleeping, but yesterday morning I woke up by being kicked in the nose and there simply isn't enough coffee in the world to make up for that.  People with neuro issues are notorious for not sleeping well, especially people with epilepsy.  So it looks like this is just kind of the way things are going to go.  I will say though that Jonathan has been the best husband ever and he is usually the one to go and get him.  He deals better with less sleep than I do and he has been a rock star daddy when it comes to dealing with this. 

Anyways, back to the seizures:  we went in and saw the neuro and the surgeon.  From what we were describing about how the seizures looked the neuro thinks they are coming from the area of his brain that deals with fear, which would explain why he get scared as they are coming on.  He said that during the mapping (when they had the EEG leads on the surface of his brain) the seizures were starting in the tuber that was there, which was clearly damaged brain tissue, and moving to this area behind it that deals with fear, which was clearly healthy tissue.  In theory, you take out the damaged tissues and the healthy tissue is fine.  Kind of explains why he's afraid of everything now though, because they cut right next to that area.  Poor baby!

So they did a 48 hour EEG to see where they were coming from.  (And let me just add that he didn't cry hardly at all while being hooked up, thanks to popcorn!  I was so impressed with how well he did!)

The doc did not talk at all like these were just left over from surgery, though we didn't ask that specific question either.  I do know that most re-lapses happen within the first 6 months.  The EEG came back completely normal.  The bad news about that is that we have no clues as to what is going on.  Are they coming from the area that deals with fear suggesting that they missed a spot or are they coming from another tuber?  We have no idea.  What kind of seizures are they?  Also, no clue and know what kind they are may direct us towards or away some meds.  The doc said we would try meds before "looking at more drastic measures."  I basically told him that we are not going through surgery again any time soon.  The good news is that it was the FIRST normal EEG he has ever had.  That it in self is a miracle.  He always had these spikes going on, even when he wasn't having seizures.  It's the static that was there and probably a big part of what was slowing down his development.   So for that to be gone means his EEG is only abnormal when he is seizing, which is awesome news.

And speaking of Jack's development, it is skyrocketing.  I think it was going at a quicker pace before the seizures came back, but he is still taking off and it is such a joy to watch.  His little personality is also coming out and the boy is just a ham.  It's hysterical.

Yesterday we had a conversation that went like this:
Jack: "kitchen"
because he wanted to go in the kitchen and play with his trains in there.
me: In an attempt to get him to say two words together I point to my mouth, "in kitchen"
Jack: points to his mouth "KITCHEN" and then runs to the gate and says "in"   

Stinker!!!

And he is very much not a baby anymore.  I think I asked the doctor if they took that out too while they were in there.  The thing about having a special needs kid is that all of those stages that you have to get through as a parent, the ones where you tell yourself that it's a stage and it will past, last so much longer.  But the baby phase for us is now totally over for now (with the exception of wanting to be rocked still) and there is no doubt that we have a toddler.   

We correct how he says things often in an attempt for him to become more understandable.  One of the things he has a hard time with is the "s" sound.  So we were saying "ssssssssss, snake" just to get him to make the sound.  Now any time we try to correct him in any way he says "sssssssss, ake".  So I could be encouraging him to say 'potty' instead of 'paw-paw' and he says "ssssss, ake".  Goofy kid!

So surgery was not unsuccessful.  I can't really say it was completely successful either, but it is not something that we regret doing.  Jack is slowly becoming more active again and even occasionally goes down a slide now at the park, something that he was terrified of not long ago.  He is also making progress in swimming again, which again was something that freaked him out not long ago. We just want him to be able to enjoy things again, and he is slowly getting there.

One thing that he totally enjoys is eating.  Man, the kid can eat.  He may not sleep worth a damn but at least I know that I don't ever have to worry about him getting enough.  Eggs, bacon, nuts, and strawberries are his go-to foods.

 

We have another appointment in a few months with the neuro, but for the time being we are leaving things as is.  He is having anywhere from 4 seizures a week and he just went his longest stretch without one which was 2 weeks, so we will continue to track them and in the mean time, just enjoy life as much as possible.  He really is the cutest kid ever and I love seeing him grow and play.

I hope you can follow my rambling thoughts in this post.  I'm not sure as I'm a bit all over the map right now.  A post about me and what's been going on is soon to follow.